Real stories

The dementia care crisis behind closed doors

For too long, the dementia care crisis has been hidden behind closed doors, lived by people who rarely have opportunities to be heard. ‘Dementia Care: The Crisis Behind Closed Doors’ tells the stories of 12 families from across the country, all of whom have struggled to access affordable, good quality care.

In 2019, we invited MPs from across all the main political parties to attend and meet some of the families featured in the exhibition to hear more about their experiences.

We hope that these often unheard, powerful stories illustrated the wide range of challenges people with dementia are still facing in the current care system.

We want these images and stories to inform the debate on social care and encourage MPs to take action to fix it. 

Read the stories behind the photos

Below we have a collection of the photos from the exhibition which took place on 9 July 2019. You can read quotes from the people affected by dementia who took part.

Christine and Bernard

'My husband was in five different care homes, almost all of which he had to be removed from for his own safety. No other family should have to go through this.

Bernard’s story does not make for easy reading. Before passing away in 2017, he repeatedly experienced the kind of appalling treatment that no one should ever have to endure. His treatment in one care home is still subject to a criminal negligence case. As I see it, he was dangerously let down again and again by staff who lacked the training and the understanding to keep my husband safe. He had to be moved into different homes multiple times because of very poor care.' - Christine

Philip, Rosemary and Sylvia

'Mum wouldn’t survive more than 48 hours without nursing care. Why have we had to spend £160,000 to make sure that doesn’t happen? If you want the process of applying for dementia support to be efficient, transparent and straightforward, then our experience – as we’ve sought support for our mum, Sylvia – could hardly have been further from the ideal.' - Philip

Enomwoyi and Pearl

'For just two hours of care each day, we pay £570 a month for private carers. The previous carers, sourced by the local council, would not even say hello to my mum and I would have to explain her needs repeatedly.

It was only when I really put my foot down, after seven months of waiting for a social services assessment and mum ending up in hospital, that mum’s care finally began to move forward – and still our savings are disappearing fast.' - Enomwoyi

Atherton and Deborah

'We pay an extra amount every week in fees just because my husband has dementia. The savings covering these costs won’t last forever. I am constantly thinking, then what?

With each week that passes, the stress of covering the costs of Atherton’s dementia care grows. By the end of the year, he’ll have nothing left.' - Deborah

Julia and Bob

'Dementia has not only robbed my husband of the life he built, it’s also stolen his identity. I need some help to get us through this.

My husband Bob, who lives with dementia, needs care during the day. But it is the nights that are extremely difficult. Every night Bob wakes up shouting, keeping me awake throughout the night. It’s loud enough to wake the neighbours too. Night care would massively reduce the strain, but the only option I’ve been offered is too expensive.' - Julia

Ivana and Val

'Watching the person you love experience this cruel disease is heartbreaking enough. We shouldn’t have to go through this financial stress too.

For many years, Ivana and I lived a very busy and happy life together. We worked hard and saved well for our future together. Initially, when Ivana was diagnosed with Alzheimer’s, we stayed focused on the future. But when her health began to decline in 2018, I stopped thinking about the future we had planned together. Ivana needed to move into a care home, and our savings began to disappear. One year on, Ivana has almost nothing left and my bank balance is falling fast.' - Val

Sharad and Nimisha

'We were told we would have to fight to get dad the right support. But nothing prepared us for how hard it would be.

I don’t think dementia ever affects just one person. It affects everyone close to them too – their family, their friends. And my experience is that the care system hasn’t helped any of us. It’s actually made things more distressing – for my dad, Sharad, and for all of us who are trying to make dad’s life with Alzheimer’s as comfortable as possible.' - Nimisha

Jenny and her mum

'After two and a half years, the money from selling our family home had been spent on mum’s care. We had to move her because the home wouldn’t accept the rate available from social services.

Ever since mum was diagnosed with dementia, all we have wanted is to find affordable, good quality care for her. But it feels like there have been many barriers to cross to achieve this – all the money we made selling our family home has now been spent on care.' - Jenny

Paul, Hillary and Karen

'What my brother went through while in a care home was devastating. I won’t let my family go through that again.

I was recently diagnosed with the early stages of Alzheimer’s, and I’m already putting plans in place to avoid living in a care home. Having seen how the care system let down my brother, Edward, I’m doing everything I can to stay in my own home, with care workers visiting when I start needing extra help.' - Paul

Sandra and her mum

'We are days away from mum’s savings running out. Why will no one tell me what will happen to her care?

Imagine being asked to sign a contract agreeing that you will pay a regular sum of money, without the contract specifying how much. You’d think someone was having a laugh, wouldn’t you? But that’s exactly the situation I found myself in earlier this year, as I tried to organise payment for my mum’s dementia care.' - Sandra

Jag and her mum

'Why, in a society like ours, am I having to seek culturally appropriate care for my mum? And why do I have to pay extra for it? It’s never been easy finding support for my mum that takes cultural differences into account. She has to have female care staff and they ideally need to speak Punjabi. Arranging that really shouldn’t be as stressful as it has been.' - Jag

Lesley and Shelley

'I fear for people with dementia who don’t have relatives because they become so vulnerable. Who fights to stop them falling through this broken care system?

I became my sister Shelley’s carer overnight, with very little idea of what was ahead of me. From that moment on, getting the support we both needed seemed like an endless struggle. It’s been an extremely distressing time for the whole family.' - Lesley

This article was first published on 18th July 2019 and last reviewed on 9th July 2021.